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  #1  
Old Tue Apr 14, 2015, 08:16 PM
dsandrock91 dsandrock91 is offline
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Join Date: Apr 2015
Location: Columbus, Ohio
Posts: 9
Any one in Columbus Ohio with AA

I was recently diagnosed with AA and looking for others with it and how they cope with it and live a "normal" life. Since getting diagnosed I am in a constant state of worry and feel like I have stopped living to my fullest because I am so scared of dying or my numbers getting so low that I will get severlly sick and end up in the hospital. If any one is in my area would like to meet up with you and hear your story and be of some support to you. Since I know since getting diagnosed have felt alone and like no one understands what it feel like to live in a constant state of worry over you blood cell levels. I just want to let you know that you are not alone and that someone feel the same way you do.
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Dalesa, 23 yrs old, diagnosed AA 2014, currently no treatment method being used.
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  #2  
Old Wed Apr 15, 2015, 11:53 AM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
Any of you in Ohio should seriously consider this conference for AA,MDS,PNH, and PRCA.

https://friendraising.donorpro.com/campaigns/101
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Wed Apr 15, 2015, 09:59 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi Triumphe64,

Congratulations on your wonderful rise in Hgb to 16.3. Very glad to see that for you!
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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  #4  
Old Wed Jun 10, 2015, 12:21 AM
summerdrake summerdrake is offline
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Join Date: Dec 2013
Location: United States
Posts: 16
Hi!! I had my treatments done at OSU in the James Cancer Hospital. Is that where you are?
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Summer, 27; diagnosed with SAA May 2013; BMT June 7, 2013; off meds, no signs of GVHD; doing wonderfully!
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  #5  
Old Thu Jun 11, 2015, 12:11 PM
dsandrock91 dsandrock91 is offline
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Join Date: Apr 2015
Location: Columbus, Ohio
Posts: 9
Yes I go to James

Yes I go to the James. I will meet with a bone marrow transplant specialist soon to see if that is something to consider. But since not all my levels are dropping, and just recently my red started to drop they think the IV treatment may be a better option for me right now.
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Dalesa, 23 yrs old, diagnosed AA 2014, currently no treatment method being used.
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